Monday, 2 April 2012

A Wild Personal Post Appears: I Have Two Conflicting Diseases!

Just in case some of you aren't aware of one or the other of these, I have two major health problems.

1. Selective Eating Disorder - I have had this my whole life, since before I can remember. Calling me a picky eater or asking me to just try something is the same as asking a clinically depressed person to "just cheer up." It has improved a little in the last five years, but by a little I mean moving on from eating one specific brand of plain cheese to trying other similar brands. It causes extreme social problems because I cannot go "out to eat" anywhere with people unless I'm dictating where, which seems controlling and is also repetitive and boring to others. I can only eat very plain foods, I can't mix foods, the most complex food I can eat is pizza (base + sauce + a couple of toppings like mushrooms and olives + cheese) but like.. I can't eat a cheese sandwich, or mushrooms on their own, or tomato sauce on pasta. I think I can only eat pizza because I've eaten it since before I remember. I just can't put things in my mouth, texture is a big thing, like plain rice or mashed potato, tried both, and while it isn't a repulsive flavor like licorice or something, I can't eat more than a mouthful because of texture. There are millions of things, it's easier to list the things I can eat than I can't. I can eat - quite a big range of fruit, a medium range of vegetables (raw, never cooked), white bread (of varying types, not just like sliced sandwich bread, I can eat Italian bread, sourdough etc), plain cheese like tasty or mild cheddar, snack foods like plain crisps and crackers, a few types of nuts, sweet snacks like cookies, pastry and plain cake, pizza, chips/fries (unseasoned), juice, soda, one single brand of chocolate milk, plain pasta (literally just cooked in heavily salted water and that's it), olives, ice cream.. I think that's it. That's all. I have tried to treat this with a range of options including seeing a nutritionist and a hypnotherapist. The article also mentions "severe refusal behaviors if presented with non-preferred foods" and that is more than accurate, including, for me, sobbing, anxiety, shame, anger. Not just like, if I see the food, but if I am either forced or socially pressured into eating it, or if I think I'm not going to be able to obtain food I can eat.

2. Ulcerative Colitis - this is an autoimmune, inflammatory bowel and stomach disease. You may have heard of Crohn's Disease, this is a type of it. Don't read the wiki, it's gross. But basically it means I have a lot of stomach problems, sores on my intestine, sometimes pain, sometimes bleeding into the gut. It's not curable. It's managed with steroids and with lifestyle/diet changes. Sometimes they have to operate later in life and cut out bits of your intestine that are too eroded. People who have it have a high risk of bowel cancer later in life. It isn't 24/7, it can go away and come back, this is called a flare-up. It's a chronic disease. I was diagnosed in 2008, and that was pretty bad, and 2009 was pretty bad. 2010 and 2011 were not so bad, but this year I had to go to hospital in January and I'm having a new flare-up now which is presenting with a fun, apparently common side effect (but the first time I've had it) - crippling joint pain. This will lead to arthritis. Last night I was having fits of shaking, a crazy fever, and my knees locked up and I had to take strong painkillers AND a high dose of steroids to get to sleep. Both times that I've been in hospital for this - when I was diagnosed and early this year - my pain was managed with high doses of morphine. I really hate morphine.

Have I mentioned this disease has no cure and also no cause? It is a fucking first world problem. It presents most commonly in Ashkenazi Jews, of which I am one, genetically. It's a fairly "new" disease, a "lifestyle" disease which may come from our culture's exposure to pollution or refined foods or stress. It is a fucking #firstworldproblem but it can be very debilitating.

I'm terrified of this joint pain becoming regular and having to depend on steroids regularly because of how fat and sick they make you in other ways. I'm trying to figure out if I can make any lifestyle changes and let me tell you the foods that are worst to eat - foods high in fibre or highly processed, such as raw vegetables, fruits with pulp or seeds, nuts, breads, whole grains, refined sugar, and for some people, dairy. Carbonated drinks, caffeine, and spicy foods are all bad too. Meat, also, but I'm a vegetarian since childhood for moral reasons, so I'm never going to eat meat.

WHAT THE FUCK AM I MEANT TO EAT? Even without SED I have no idea how people with UC get any nutrition sticking to that diet. Do they just eat mashed potatoes and sprinkle some crushed vitamin tablets on top? But seriously without complex carbohydrates and the vegetables I can eat, my diet will not be in any way enough to keep me alive. I'm surprised that I haven't had deficient before, due to my SED, but I've only ever lacked B vitamins and iron due to not eating meat. I could manage the SED alone or the UC alone but it's starting to become worrying and scary trying to deal with them both together. I'm getting sicker and I don't know what to do.

1 comment:

  1. I have SED too (although I didn't know that was the official name). I'm sorry that you have that double problem to go along with it. I have managed to expand my diet a little by just trying a bite of the same food a lot of times. If you can steal pieces of a friend or family member's food, that's ideal.

    Also, I was wondering if you get made fun of for your "picky eating". Even my one friend who really understands that what I have is a disorder teases and makes fun of me for it, even though she knows it makes me really self-conscious and embarrassed. If you have any tips on handling it, that would be helpful.